There are times, both good and bad, that are recorded forever in our memories. On the good side are such events as weddings, the birth of our children, and perhaps a graduation or some other significant milestone. On the bad side might be the deaths of our parents or other family members, being dismissed from employment or a failed romantic relationship.
On April 4, 2011, I experienced one of those "I'll remember it forever" moments when, following an early morning CT scan, my internist said, "I'm very sorry; it's metastatic pancreatic cancer." That this news was delivered on my 40th wedding anniversary brought greater misery to the moment, one that not even the myopia of time will erase from my memory.
What follows is a description of what I did following this unhappy news, why I selected a clinical trial rather than the "standard treatment" and my experience (to date) during the trial.
Metastatic pancreatic cancer, I was told, is incurable but is treatable. There is a standard treatment approved by the FDA which can prolong life for a period of time, although that period typically is less than a year. In the alternative, there are clinical trials. When one explores pancreatic cancer trials on the Internet, the number of such trials and the amount of information is overwhelming. I decided to visit a number of cancer research centers that had ongoing clinical trials. I traveled to three such centers and met with physicians who, sometimes, were accompanied by nurses, geneticists and other medical personnel. The physicians were uniformly articulate, conversed in plain English, and were direct, informative and responsive to my questions -- such as in (a) what are the risks of the trial?, (b) what are the potential side effects and their intensity?, and most important of all, (c) the possible benefits of the trial).
Following these meetings, I selected a clinical trial at a facility in my home town. While I was impressed with the people at the facility (more on that below), geography played a large part in the selection. Everyone with whom I spoke emphasized that ease of access to the place where the clinical trial is located is an important factor (causing me to speculate about what pancreatic cancer patients do who live hundreds of miles from the nearest clinical trial).
One of the reasons I selected a clinical trial over the standard treatment was the sense of empowerment it gave me, however self-aggrandizing that may seem. Nonetheless, by selecting my form of treatment I felt I was a decision maker and not just a participant in the process.
As I understand it, a clinical trial is largely about medicine and techniques to deliver the medicine in an effective manner so that the most successful treatment can be achieved. From what I have seen, however, such trials are personnel intensive and the personnel, at least from this patient's perspective, are inexorably connected to the success of the trial. Physicians, nurses and other medical personnel are in abundance, and then some. I have no experience with which to compare the people who work in my clinical trial with any other such trial, but after nearly eight months as a participant in the trial, I have been overwhelmed by the competence and compassion of the medical personnel who populate my trial. This is not a reflexive judgment. A lot of people would testify that I am relatively slow to praise. But I've decided that it takes a very special, kind and patient person to work in a cancer clinical trial. Let's face it: none of us are at our best after being diagnosed with cancer, and the clinical trial personnel meet us at our most exposed and threatened times.
My command of the Queen's English is insufficient to describe how superb I believe the people in my clinical trial are: they are not only competent and compassionate, they also are supportive, excellent communicators, and candid when they need to be so. They are also possessed of a rich sense of humor, an important attribute under the circumstances. I have been lucky -- indeed, blessed -- by their skill and their company.
Finally, and most important of all, I have been blessed in another way. My wife of nearly 41 years is a three-time cancer survivor, including malignant metastatic melanoma. (For the medical personnel reading this, it was not a misdiagnosis and yes, 21 years ago, my wife survived that disease.) The other two cancers were unrelated to the melanoma. Throughout many years of painful and difficult treatments, through discouraging and just plain scary times, I have never heard my wife complain, I have never heard her say, "Why me?", and I have never seen her discouraged. She has always soldiered on, determined to live each day given to her to the fullest extent possible. Every cancer patient, whether in a clinical trial or not, should have a role model like my wife.
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